Podcasts

Podcast – Literature meets science – Finding the Right Words

Hosted by Dr Claire Sexton

Reading Time: 26 minutes

In this podcast Dr Claire Sexton, Director of Scientific Programs & Outreach at the Alzheimer’s Association interviews Professor Cindy Weinstein and Professor Bruce L. Miller. Discussing their collaboration on a new book ‘Finding the Right Words – a story of literature, grief, and the brain’.

This podcast was originally recorded as an ISTAART webinar in August 2021, visit their website and become a member to join over 100 webinars, events and conferences every year.

This is the moving story of an English professor studying neurology in order to understand and come to terms with her father’s death from Alzheimer’s.

Finding the Right Words follows Cindy’s decades-long journey to come to terms with her father’s dementia as both a daughter and an English professor. Although her lifelong love of language and literature gave her a way to talk about her grief, she realized that she also needed to learn more about the science of dementia to make sense of her father’s death.

To write her story, she collaborated with Professor Bruce L. Miller, neurologist and director of the Memory and Aging Center at the University of California, and Co-Director of the Global Brain Health Institute.

It combines a personal memoir, literature, and the science and history of brain health into a unique, educational, and meditative work. Cindy articulates dealing with a life-changing diagnosis, describing the shock of her father’s diagnosis and his loss of language and identity. Writing in response Bruce describes the neurological processes responsible for the symptoms displayed by her father. He also reflects upon his own personal and professional experiences. Their two perspectives give readers a fuller understanding of Alzheimer’s than any one voice could.

Find out more about the authors on their website and order the book with the links below:


Click here to read a full transcript of this podcast

Adam Smith:

Hello and thank you for listening to the dementia researcher podcast. This week’s show is brought to you in collaboration with the Alzheimer’s Association, it was originally recorded by them as a webinar on the 26th of August and we’re delighted to have permission to share it with you as a podcast. Please remember if you’d like to listen to more Alzheimer’s Association webinars, visit their website at alz.org and check out their ISAART pages. Thank you for listening.

Dr Claire Sexton:

Hello. My name Claire Sexton. I’m director of scientific programs and outreach at the Alzheimer’s Association. And it’s my pleasure to welcome you to this Alzheimer’s Association awardee update. Awardee today is Professor Cindy Weinstein. Cindy is the Eli and Edythe Broad professor of English at the California Institute of technology, and also a senior Atlantic fellow for equity in brain health at the Global Brain Health Institute or GBHI.

Dr Claire Sexton:

While at GBHI, Cindy was awarded a 2020 pilot award for the global brain health leaders. And this award supported the development of the book, finding the right words, a story of literature, grief and the brain. And this is published by John’s Hopkins University press in September and we’ll be putting the link to that to pre-order if you would like in the chat. Cindy wrote this book with Professor Bruce Miller, the A.W. and Mary Margaret Clausen distinguished professor in neurology at the University of California, San Francisco, and a co-director of the Global Brain Health Institute.

Dr Claire Sexton:

And the book is a memoir of Cindy’s father, Jerry Weinstein, who was diagnosed with early onset Alzheimer’s disease in 1985, when he was just 58 years old. In the book, we hear how just as Cindy was starting her PhD program in literature, her father was in Florida and his symptoms were progressing. So Cindy describes the irony of the situation as follows.

Dr Claire Sexton:

Irony is the condition of reading a book a day in preparation for one’s oral exams, while one of the people you love the most in the world, your father, loses at least one word a day and can’t read a stop sign anymore. And the book combines Cindy expertise in literature and Bruce’s in neurology to create a lyrical, informative, interdisciplinary and deeply moving account of dementia. I cried probably every third or fifth page through the book.

Dr Claire Sexton:

Today we’ll be hearing about background to the book, we’ll be hearing more excerpts from it read by Cindy and also read by Bruce, we’ll be discussing those passages and we’ll also be answering any questions you may have. So first thank you both for joining us today, we’re delighted to be talking about your book. First Bruce, just to set the scene a little, I wanted just to, if you could tell us a bit more about your background and also about the Global Brain Health Institute which was so integral in forming this collaboration.

Prof Bruce Miller:

Honored to be here and thanks so much Claire and the Alzheimer’s Association for hosting us today. So I met these two brilliant women, Cindy Weinstein and Claire Sexton when they were fellows in our Global Brain Health Institute. The idea is that we are facing an epidemic, many of the people listening today know that from personal experience. One of the things that we have realized and the Alzheimer’s Association has been really brilliant in telling this story, is that there are many things that happen during our lives that we could do to change the likelihood that we would ever get Alzheimer’s disease.

Prof Bruce Miller:

So these are the potentially reversible or treatable components to cognitive impairment. These are things like exercising, living in a rich environment, preventing head trauma, eating in a way that prevents cardiovascular and cerebrovascular brain risks. And so the Global Brain Health Institute was formed to train fellows from across the world, from underserved communities to focus on these reversible preventable factors associated with bad aging.

Prof Bruce Miller:

And so the founder of this was Chuck Feeney, a great philanthropist who doesn’t want his name mentioned or put on any of his philanthropic efforts, but this is a program that is half in Ireland. Chuck is Irish American who adores Ireland and other half in San Francisco. And we train fellows from diverse regions and also from diverse professions. We began to realize that people like Cindy, who bring eloquence to writing about these problems are critically important to finding solutions.

Prof Bruce Miller:

We knew that someone like Claire who came to us from Oxford, who wanted to increase exercise in our communities and work on these preventable risk factors were going to be key to the future of our planet.

Dr Claire Sexton:

Thank you. And Cindy, how did you first hear about GBHI and how far along were you with the development of the book when you first got involved?

Prof Cindy Weinstein:

Well, thank you Claire. I had no idea what GBHI was until the summer of 2017, when I had been having trouble finding a co-author for the book, I had spoken with Ken Kosik at Santa Barbara about working on the book together and I had sent him a couple of chapters, that’s how much I had done. And he really liked them and said, I don’t have time do this with you, but there’s this guy at UCSF and you should really get in touch with him.

Prof Cindy Weinstein:

And that turned out to be Bruce Miller. And I wrote an email to Bruce and in his great generosity, he said, come on down to UCSF and let’s talk about your project. And we did, and we shared the books we loved, and he liked some books that I really didn’t like very much, but we decided that this would not be fatal. And he then said the magic words to me, which were, “Do you want to learn some science?” And I said, “Yes, I would.” And he said, “Well, then you need to apply to this program that we have called GBHI.”

Prof Cindy Weinstein:

And this was very important for me to do, because I didn’t want to write this memoir by myself. I had been living with my father’s dementia and thinking about it for so long by myself and knew that I needed another language, another discourse to fully understand or more fully understand what was happening with his brain. And I applied to GBHI and it was a grueling application process, several essays to be written, several interviews to go through. And then I was accepted into the program and had a magical year, I just got a smidge of neurology from the very best in the world.

Prof Cindy Weinstein:

I got to attend grand rounds talks at 8:00 in the morning every Friday and spent most of my time Googling the words that I didn’t understand. I spent many hours trying to learn how to read a PET scan, Bruce assured me that by the time the year was over I would learn how to do that, I did not.

Prof Bruce Miller:

Cindy, I have to just clarify for the audience one thing. So, these books that Cindy didn’t like, they’re not cartoon books, I am a physician, but I do read and it was just a difference of opinion and it had no effect whatsoever on the product that we carved together.

Dr Claire Sexton:

No, no, I wanted to ask you Bruce, because we heard from Cindy the importance for her then of having science contributing to the project. For you then, well, what was the importance of this bringing in literature as well as having that scientific component?

Prof Bruce Miller:

I learned so much from Cindy from the minute we started talking and it really put me into a different space than I had ever been in before. I was beginning to feel in a way that was truly profound. What happens to a caregiver when they begin to lose someone that they love? And Cindy was as eloquent about this as anyone I had ever met. She brought the perspective, the point of view of literary professor and a writer. And I think almost immediately, it began to change the way I worked with families and patient.

Dr Claire Sexton:

And I think a bit later on we’ll probably touch upon a bit more some of those themes about how the impact of the diagnosis and prognosis on family members. But first we kind of, I think we might dive in with one of the other themes throughout the book which is language. So then this is the appreciation and the understanding of scientific language. The language around literature and also Jerry’s loss of language over time. So, Cindy, I don’t know, would you be okay to read an excerpt from the book which focuses on I think scientific language in particular?

Prof Cindy Weinstein:

Absolutely. This is from the first chapter of the book called diagnosis. And my section of the chapter is called hitting the fan. Each chapter focuses on a clinical presentation of the disease and I describe it from the point of view of an English professor daughter, to which Bruce responds as an neurologist.

Prof Cindy Weinstein:

So, this is from hitting the fan. In the language of literature, the order of events make up the plot, which informs an interpretation. In the language of medicine, the order of the symptoms creates a plot of the disease which in turn allows for a diagnosis. The best readers of stories help us see the importance of details in the plot that we may have overlooked or failed to appreciate. Literary critics use a strategy of close reading to unfold the complexities of a novel or a poem. Doctors do this too, but what gets closely read are symptoms such as shaky gates, incomplete sentences and wobbly handwriting.

Prof Cindy Weinstein:

The brain also gets read as it were in MRIs and PET. These images of the brain don’t reveal the symptoms, but rather explain them with reference to the location of the atrophy or shrinkage in the brain. The best readers of MRIs and PETs can see where the sulci bruise in the brain are too deep or too wide indicating erosion. Or with the case of PET, the areas where metabolism is diminished, they can tell when the gyri, the folds in the brain lose mass and get Branny, signaling deterioration.

Prof Cindy Weinstein:

As an English professor and the daughter of a father who had early onset Alzheimer’s disease with a logopenic variant, I find this language of atrophy, aphasia, sulci and logopenic variant at one’s powerful and weirdly comforting. I feel enriched by these words, partly because learning new words, even ones that translate into pain make me happy. And partly because they tell a story about my father, that looking back might have been valuable to me at the time he was ill.

Prof Cindy Weinstein:

So that is one section of the diagnosis chapter. The next chapter is about word finding, and I’m going to turn things over to Bruce to talk about that, but I want to set the stage. The word finding chapter is really a little vignette about going to the supermarket with my father and him not remembering, not being able to find the word for what he wanted for dinner. The word is Crouton and I tell of our adventure, our terrible adventure going through the aisles of the supermarket with me, an expert in Scrabble and crossword puzzles, figuring I could find any word that my father couldn’t find. And eventually we landed on Croutons, because he saw the boxes of Croutons in the aisles. And Bruce reflects upon the neurology behind what happens when a person with Alzheimer’s can’t find a word. So, Bruce, do you want to take it from there?

Prof Bruce Miller:

Yes. And I think what Cindy describes beautifully in the book is, from her point of view as a professor of English, what happens to her father’s language. And what’s so important to me as a neurologist is the first symptom as Cindy pointed out, so the first symptom that Cindy became aware of with her father was this inability to find the word Crouton. And so, the section that I write about this is called where dementia decides to dance.

Prof Bruce Miller:

A Crouton is a small square shaped piece of fried bread that is placed into soups or salads. The Crouton originated in France in the 1800s where rich and complex food culture was emerging and humans were creating a new way of cooking and eating. Croutons are an acquired taste really appreciated by young children, but by early adulthood many of us begin to enjoy the aesthetic of eating a soft and chewy green salad with dressing that is dotted with hard and crunchy Croutons, the actual origin of Crouton is from the Latin word croute, which signifies crust.

Prof Bruce Miller:

Or ordinarily words that we use frequently like mother, father, shirt, cup, table or house are more fastly produced than a word like Crouton that we learn later in life and that we use infrequently. Therefore it is not surprising that Jerry Weinstein, as part of the, his inability to name items, we call this Anomia, had difficulty generating Crouton during a conversation with his daughter.

Prof Bruce Miller:

Jerry’s struggle to remember Crouton is the first moment that Cindy becomes aware that he is having cognitive issues. Anomia is one of the earliest manifestations of Jerry’s Alzheimer’s disease, soon afterwards Cindy realized that there are other signs of trouble. Jerry was never much of a reader, but now his spelling is off and his writing is shaky. So that is the beginning. And that tells a neurologist that this disease started in the left posterior parietal temporal region of the brain, an area that Alzheimer’s disease often hits early on.

Dr Claire Sexton:

And how then, also I wanted to give a bit of insights into then how you described Jerry’s diagnosis now with all the knowledge that has built up would be different to then the diagnosis that was given at the time and what knowledge was around at that time?

Prof Bruce Miller:

When Jerry was diagnosed, I think it was really just coming out of dark ages of a neurology and psychiatry and geriatrics where we knew almost nothing about Alzheimer’s disease. In the early eighties people started to become aware that the progressive loss of memory language, spatial skills is not an ordinary aspect of aging, it represents a real disease and it is often caused by the proteins of Alzheimer’s disease, plaques and tangles. When Jerry was diagnosed, he might have been called organic brain syndrome, he almost certainly would’ve been diagnosed much later than he would be today.

Prof Bruce Miller:

And I think the anatomic precision, the molecular precision that we have has really transformed diagnosis, we now would say, as opposed to organic brain syndrome, this is a logopenic variant of Alzheimer’s disease, it is present initially in the left parietal lobe, there are tangos in that region of Jerry’s brain, which are causing loss of function. And remarkably we’re beginning to think about interventions in these early stages.

Dr Claire Sexton:

Do you say maybe a couple of those interventions maybe, do you think have the most potential that you are most excited about?

Prof Bruce Miller:

Yeah, I mean, I think the intervention that we think about intensively which is prevention is probably the most important one. And that is making sure that people at age 50 don’t have high blood pressure, that we treat hypertension, that we go after obesity, that we exercise, so that’s the prevention part that all of us can play a role in. And then there is the interventions once this disease has set in, I think we believe it must be early.

Prof Bruce Miller:

So probably even before Jerry began to misuse the word Crouton, when the beginning of the buildup of amyloid and tau is starting, that’s when we need to intervene. And I think the two exciting therapies are removing amyloid with antibodies, we have a new FDA approved drug for this and I also am very excited about removing the bad tau protein. I think these are the beginnings of very effective early intervention.

Dr Claire Sexton:

And also then, you had the opportunities for early intervention and also the book, I think really illustrates just the wide range and impact of the disease on language, on cognition, mood, sleep, every kind of aspect of functioning. Cindy then would you like to read us a little bit about the passage on sleep disruptions?

Prof Cindy Weinstein:

I didn’t know I was going to write this chapter when I went up to UCSF and became a GBHIer. There were a couple chapters I didn’t know I was going to write, I didn’t also know that the book was going to assume the structure that it did. I thought the memory chapter was going to come first, because in my mind Alzheimer’s was all about memory, I didn’t realize that there were these other aspects to it. And I learned all about that or some of that in GBHI.

Prof Cindy Weinstein:

And I knew Bruce was a expert in Frontotemporal dementia, and that behavior is crucial in terms of understanding that disease. And at one point, Bruce, I was talking to Bruce about behavior, he said to me, so did your father have any behaviors that seemed unusual? And because I was so far away, I didn’t see a lot of the behaviors, I heard about them, but there was one that really stuck in my mind and that was when he was in a nursing home and tried to pull out the sink. And Bruce said to me, you have to write about that.

Prof Cindy Weinstein:

And that became the seed for a chapter about behavior and it was in that chapter about behavior when I remembered and I want to talk about that in a bit, but I remember that my father had a lot of trouble sleeping. The memory chapter ended up being the last chapter of the book and Bruce was the one who said to me, that should be the last chapter of the book, because you’re remembering all this stuff about your dad that you had paradoxically forgotten. So that’s a long way of getting into this R rated excerpt that I am going to edit.

Prof Cindy Weinstein:

I was told that he had sundowners, I remember the moment vividly, it was over lunch at a restaurant in Bethesda, Maryland with my mother and sister. The word sundowners was woven into the conversation in such a way that there was an assumption that I knew what it was, even though no one had told me, which is why I erupted ever the potty mouth woman once I embrace the power that comes with the effective use of a well placed curse word and asked what the F is sundowners? I thought my father had another disease about which I had not been told, as if Alzheimer’s weren’t enough.

Prof Cindy Weinstein:

After being told to quiet down and calm down and not say F so loud and in public, I was informed that sundowners is not an uncommon condition that people with Alzheimer’s sometimes have, and that it happens when day turns into night. As if the days and nights weren’t hard enough for my dad, the transition from one to the other was especially tough. I have since learned that the setting of the sun can lead to agitation, anxiety and aggressive behaviors. I wonder if my dad pulled out the sink at around 5:00 PM, I wonder what else he was doing when the sun went down.

Dr Claire Sexton:

Thank you. And then, as with all of the sections in this book, then it goes from, between you both passing forward your experience and then Bruce able to add context to that. So, Bruce, I wondered if you wanted to comment just on not only just for sleep, but also then kind of understanding of behaviors as a whole and how that has changed as well?

Prof Bruce Miller:

Yes. So a very beautiful piece of writing. And I think every patient with Alzheimer’s disease is different, some are amazingly bland, placid throughout the course of the illness. Others show a fair bit of agitation and confusion, difficulty with attention, particularly as they get more tired. Often times someone with Alzheimer’s is better in the morning, but by the time afternoon comes along, the tiredness begins to catch up with them and they can become frankly confused.

Prof Bruce Miller:

You see extraordinary interactions, sometimes the person can no longer recognize their partner as their partner, I’ve seen people call 911 to get the strange man out of the bedroom. The other aspect of this is how strongly linked this confusion is to sleep awake disturbances. And I think one of the big stories of Alzheimer’s that we really neglected, our patients have told this to us, but they have asked, well, my loved one had sleep trouble their whole life, they took medicines to help them with their sleep. Did that in any way increase the likelihood that they would get sick?

Prof Bruce Miller:

And I think there’s a lot of work done now that suggests that yes, many people with Alzheimer’s disease and another form of dementia with Lewy bodies get sleep disturbances. We also now know that when we get into deep sleep, it’s critically important for two things, one, it allows us to remember, it allows us to lay down those memories that we’ve experienced during the day in a more permanent way. If you don’t get into deep sleep, you don’t remember what happened.

Prof Bruce Miller:

The other part of it is even more remarkable, which is that these bad proteins amyloid and tau are cleared from the brain during deep sleep. So if you take a medicine like Valium that prevents you from getting into deep sleep, because you can’t sleep well, well, you sleep, but you sleep in a dangerous way that begins to set the Alzheimer’s disease process into the brain. So I think a consultation around memory problem often begins with questions about sleep, because it’s so linked to how we develop these diseases and how well we do with them.

Dr Claire Sexton:

And it’s also a very active area of research for several GBHI fellows, so [inaudible 00:26:51] Georgia, Konstantina Sykara in Greece, also Yue Leng in China, because of the wide range in impact. And not just on the brain, but then also then on loved ones, I think for sleep is so important. It’s one of the key drivers for people deciding to be moving into a residential setting. One of the other themes that emerges really throughout the book is just, as you said at the start Bruce Miller, just bringing home the impact, the diagnosis, symptoms has not only on the person living with dementia, but on the family as a whole. And Cindy in the book, throughout the book, then you’re grappling with decisions regarding where you should be based when you are at grad school in California, where they should be staying in California, whether you should be moving to Florida, whether you should move somewhere in between on the east coast, to be able to move between or commuting.

Dr Claire Sexton:

And a part that really stood out to me was that you were saying these were choices that you might not quite recover from, that you found hard at the time and that you also still find hard today. And the ones and I think also faced by a number of researchers and clinicians about where to be based, how we can follow careers, but also care families as well. I wondered if you wanted to expand a bit more on that and also read some examples from your book along those themes.

Prof Cindy Weinstein:

Sure. Those were some of the hardest parts of the book to write, to talk about the decision to stay at Berkeley and finish my degree and knew that my parents were completely supportive of that. And I knew that my father would’ve been furious with me if I had given that up to take care of him and my mother too. The opening part of this paragraph is when I’m reading Moby Dick for the second time and my thesis advisor at Brandi says to me, well, maybe now you’ll have something to say about it.

Prof Cindy Weinstein:

With those words, I was completely taken with this professor and obviously with Melville and found myself reading Moby Dick again in my first year of graduate school with a different and also beloved professor. He would tell me, once I had my father’s diagnosis and finally knew why my phone calls with him were so short and strange and unsatisfying that if I left Berkeley for a graduate program on the east coast, I was thinking John’s Hopkins and thought I could commute from Maryland to Florida to help my mother take care of my father, I should just forget it.

Prof Cindy Weinstein:

Either stay in Berkeley and do the PhD or move to Florida and be with my parents. I couldn’t have it both ways. I would do a crummy job with both if I tried, he was right, but man was I in trouble? Not nearly as much as my father, of course, but I heard a small bell in my brain sounding the alarm. The poet, Emily Dickinson wrote, I felt a funeral in my brain, me too. This was a choice from which I might never quite recover that has turned out to be true.

Dr Claire Sexton:

And how did you find then writing the book as an experience and looking back on those decisions?

Prof Cindy Weinstein:

Each chapter was challenging and brutal in its own way, I should say that having the best psychiatrist around Mary De May at GBHI was really helpful. Some of those sessions that I attended were really tough, I remember we saw a video of nurses in an assisted living home working with patients who had forgotten their parent had died for example. And at that time, the idea was to remind the person with dementia of the reality of the situation.

Prof Cindy Weinstein:

And so the nurse would tell this poor 75 year old woman that her mother had died years ago, and the woman would reexperience that loss all over again. And that was sort of around the time that my father was ill and in nursing homes. And that session sent me straight into the arms of Mary De May who helped me process that. Having Bruce to talk with about these experiences of remembrance, these very difficult ones, that was incredibly helpful.

Prof Cindy Weinstein:

The GBHI cohort was amazing, they read my work, commented on it, told me when I was being too morose. I had a light bulb moment, it happened in July the year at GBHI was almost over and I had to write an introduction to the book, and I didn’t know how to write that. And for some reason, not for some reason it had to do with writing the memory chapter, I remembered the funeral for my father and in the Jewish tradition, what you do after the funeral is you sit Shiva for a week and people come and bring extremely unhealthy food so that you don’t have to do any cooking.

Prof Cindy Weinstein:

And usually what happens is you sit around and you talk about happy memories of the person who died. And memory was such a loaded term and such a loaded concept, at least for me, that I was completely incapable of participating in that Shiva. I went into dissociation mode and I was physically there, but totally somewhere else. And after the year at GBHI and coming to the end of having drafted my sections, what I realized was that I had been sitting Shiva for a year with Bruce, I didn’t know it, Bruce didn’t know it, but that’s what I was doing. And I was sitting Shiva in the way I knew how, which was reading and learning and writing and grieving and mourning.

Dr Claire Sexton:

Good. It’s important I think to emphasize, it’s not a Marose book, there are many also times of laughing and many kind of poignant times, one that stands out was I think when you were visiting your father and fell into the water and the kind of I think sometimes the added appreciation of those types of moments and shared joy and shared laughter in the context of someone living with Dementia.

Prof Cindy Weinstein:

I really appreciate your saying that, because I did know that within the storytelling of this very sad book, humor was crucial. And so accessing those moments that were in fact funny, it was not only essential for me, but I also thought for the reader, I wanted the reader to keep turning the pages, so thank you for saying that.

Dr Claire Sexton:

Just to jump on then, when you’re looking back at the memories, then one thing that you discussed was how your kind of memories of your father changed, how then immediately following his death, they were all kind of more of him post diagnosis. And then the experience of writing the book and other memories from earlier on coming back and wondered if you could speak a little bit about that and Bruce also, please do chime in with-

Prof Cindy Weinstein:

Well, I would just say that, that for me, I wasn’t afraid to look back anymore. They were, and I write about this, the memories were so precious of him being healthy and I was so damaged by the experience of his death which took over a decade that I didn’t trust myself to look back and to take care of those memories. And there was an obstacle, there was a psychic obstacle and I don’t know how this happened, but I think through time and having my own children and learning neurology, there was a way in which the scientific information unlocked part of my own brain that allowed me to no longer focus on what his disease was doing to me, but what it did to him.

Prof Bruce Miller:

And I just wanted to comment about this memory chapter that we did together, it was our one. I would think for me it was probably the hardest to do and the greatest learning for me as well and just a couple comments about that. For one is I think remembering is good and I think avoiding it, not engaging with it, it doesn’t work, because you go back to it in your dreams and I think more and more we’ve learned that we shape memories when we’re dreaming, sometimes falsely, sometimes truly. But what this experience also did for me is I was trying to explain memory to the lay reader, about how we remember events, how we remember emotional events.

Prof Bruce Miller:

And I realized that nomenclature, the structure that we have for memory is very incomplete. It made me realize that science has a long way to go to think about with regards to how we remember. And the other thing that I think in parallel with Cindy, this is something that the book stimulated, I started thinking about my dad and my mom very different sorts of deaths, but also began to remember things during their illnesses that so strongly shaped me, that hurt me, that made me sad, but when I finished the book, my mother passed away. And I began to think about the great things about my mom and I wanted to incorporate, and I think Cindy had the same experience, the great side of my mother into who I was. And so I think these memories that we have about our parents, our loved ones very much propel us and make us better.

Dr Claire Sexton:

Thank you, thank you so much for sharing so openly in the book and also here. And Bruce, if you had any feedback from others on the book?

Prof Bruce Miller:

Well, I guess I’d give special thanks to Rosalie Gearhart, who I’ve worked with since I started in 1998 who really wanted me to write something that was, um, more for, uh, the general public. And I think I was so lucky that Cindy came along and asked me to work with her, I mean, I was really the lucky one. And so I think between Rosalie’s encouragement and Cindy’s passion, this was really a glorious year for me. The other thing we should probably both say is we had two unbelievable helpers on this one, was Carolyn Prelow on our side and the other was Sarah Weinstein who both were intimately involved with making this look right and feel right and they were fantastic.

Dr Claire Sexton:

I think that brings us to time. So I just wanted to say huge thank you to you both for joining us, for telling us more about the book. For anybody who is interested, we put the link back in, you’ll be able to order your own copy, receive it in the post in September, please do. Such a fantastic book and really you all have had the taste of it today than just bringing together those different worlds, the lived experience, the scientific insights and really in such an eloquent and interesting fashion throughout. So, thank you Cindy, thank you Bruce and please do keep us updated with how the book get on as well after its publication.

Prof Bruce Miller:

Huge thanks Claire. You’re amazing.

Prof Cindy Weinstein:

Thank you so much Claire and everyone for coming.

Voice Over:

Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s research UK and Alzheimer’s Society. Supporting early career dementia researchers across the world.

END


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